ArticleHealth expectations : an international journal of public participation in health care and health policy2019
'The Future is Probably Now': Understanding of illness, uncertainty and end-of-life discussions in older adults with heart failure and family caregivers.
Article in Health expectations : an international journal of public participation in health care and health policy, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
12 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Differences in family caregiver experiences and expectations of end-of-life heart failure care across providers and settings: a systematic literature review.BMC health services research · 2023Pooled it
- Total uncertainty: a systematic review and thematic synthesis of experiences of uncertainty in older people with advanced multimorbidity, their informal carers and health professionals.Age and ageing · 2022Pooled it
- Observation of risk perception, knowledge and behaviour related to covid-19 in heart failure patients enrolled on a telecoaching program.BMC medical informatics and decision making · 2026Article
- Tree of peaches: exploring what matters most at the end-of-life among healthy older adults in Taiwan: a qualitative study.BMC palliative care · 2026Article
- A dyadic perspective on disease coping experiences and support needs in chronic heart failure patients and informal caregivers: a qualitative meta-synthesis.Frontiers in cardiovascular medicine · 2026Review
- Using the 5Ms Framework to Advance Aging-Responsive Care for Heart Failure with Reduced Ejection Fraction.Clinical interventions in aging · 2025Review
- Dealing with an uncertain future: a survey study on what patients with chronic kidney disease actually want to know.Clinical kidney journal · 2024Article
- Engaging Families in Adult Cardiovascular Care: A Scientific Statement From the American Heart Association.Journal of the American Heart Association · 2022Article
- Characteristics for a tool for timely identification of palliative needs in heart failure: The views of Dutch patients, their families and healthcare professionals.European journal of cardiovascular nursing · 2020Article
- Living with advanced heart failure: A qualitative study.PloS one · 2020Article
- "Whatever happens, happens" challenges of end-of-life communication from the perspective of older adults and family caregivers: a Qualitative study.BMC palliative care · 2019Article
- 'The Future is Probably Now': Understanding of illness, uncertainty and end-of-life discussions in older adults with heart failure and family caregivers.Health expectations : an international journal of public participation in health care and health policy · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
Abstract
backgroundEarlier end-of-life communication is critical for people with heart failure given the uncertainty and high-risk of mortality in illness. Despite this, end-of-life communication is uncommon in heart failure. Left unaddressed, lack of end-of-life discussions can lead to discordant care at the end of life.
objectiveThis study explores patients' and caregivers' understanding of illness, experiences of uncertainty, and perceptions of end-of-life discussions in advanced illness.
designInterpretive descriptive qualitative study of older adults with heart failure and family caregivers. Fourteen semi-structured interviews were conducted with 19 participants in Ontario, Canada. Interviews were transcribed verbatim and content analysis was used to analyse the data. MAIN
resultsUnderstanding of illness was shaped by participants' illness-related experiences (e.g. symptoms, hospitalizations and self-care routines) and the ability to adapt to challenges of illness. Participants were knowledgeable of heart failure management, and yet, were limited in their understanding of the consequences of illness. Participants adapted to the challenges of illness which appeared to influence their perception of overall health. Uncertainty reflected participants' inability to connect manifestations of heart failure as part of the progression of illness towards the end of life. Most participants had not engaged in prior end-of-life discussions.
conclusionDetailed knowledge of heart failure management does not necessarily translate to an understanding of the consequences of illness. The ability to adapt to illness-related challenges may delay older adults and family caregivers from engaging in end-of-life discussions. Future research is needed to examine the impact of addressing the consequences of illness in facilitating earlier end-of-life communication.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.